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2013 BMT Reunion

The 2013 BMT/Hematopoietic Cell Transplantation Reunion
On Friday, May 10, two bone marrow transplant recipients – a Simi Valley boy who just turned 8, and a 63-year-old Woodland Hills man whose parents were Holocaust survivors – met the donors who saved their lives. The event was the emotional highlight of the 37th annual “Celebration of Life” Bone Marrow Transplant Reunion. In the audience, some smiled, some cried, but all understood.  Read more >>
 
 
 
 
BMT Recipient: Ryan Compton, age 8 - Simi Valley, Calif.
‘Thank you for saving my life.’

In November 2010, a few days before her 5-year-old son Ryan was to undergo a bone marrow transplant from a donor they had never met, Maggie Compton made a print of Ryan’s tiny hand on a blank greeting card, which she planned to send to his donor with her own thank-you letter.
   
BMT Donor: Barry Crackett, age 34 - Northumberland, England
'I just hope that if my baby ever needed a donation there would be someone to step up.’

Barry Crackett was sitting alongside his wife Jessica’s hospital bed in England admiring their newborn son, Sol.  They’d planned for a peaceful water birth at home, but sudden complications led to a hospital birth and a rather traumatic entry into the world. Now that things were calm, and Sol was fine, Crackett finally could read the letter.
   
BMT Recipient: Joseph Mandel, age 63 - Woodland Hills, Calif.
‘You just did a lot of praying that they would eventually find somebody.'

It takes cancer survivor Joseph Mandel awhile to open his Woodland Hills front door because he’s on crutches. His leg injury, however, is not due to disease but to a recent skiing accident.  Mandel, who underwent a stem cell transplant  from an unrelated donor in 2010, is back to his old passions, sailing down slopes, white-water rafting, and is even courting new loves like sky diving.
   
BMT Donor: Nevo Segal, age 25 - Israel (currently living in London)
‘I think that one cannot refuse an offer to help save someone’s life.’
 
In November 2010, a few days before her 5-year-old son Ryan was to undergo a bone marrow transplant from a donor they had never met, Maggie Compton made a print of Ryan’s tiny hand on a blank greeting card, which she planned to send to his donor with her own thank-you letter.
 
Read story
 

Recipient: Ryan Compton



‘Thank you for saving my life.’

In November 2010, a few days before her 5-year-old son Ryan was to undergo a bone marrow transplant from a donor they had never met, Maggie Compton made a print of Ryan’s tiny hand on a blank greeting card, which she planned to send to his donor with her own thank-you letter.

For the next 2½ years she could never finish her letter because “words seemed so insignificant.” Recently learning she could thank the donor in person May 10 at City of Hope’s Bone Marrow Transplant Reunion, she finally found her muse, and put her gratitude into words. She also helped Ryan craft a message: “Thank you for saving my life.”

“You gave our young son a second chance at life when it seemed that all his options had run out,” Compton wrote to the donor. “You must have a super hero’s immune system and energy, because that is what you gave him when you shared your marrow.”  Looking at the boy who loves swimming and karate, and is so boundlessly energetic he’ll start running during a four-mile walk, “it’s hard to tell now that he was ever sick,” she added.

That was not the case during much of Ryan’s life.  In March 2007, at just 22 months old, Ryan turned lethargic and started spiking high fevers. Initially diagnosed as the flu, the illness soon was re-diagnosed as acute lymphoblastic leukemia. He underwent intensive chemotherapy over the next 3 ½ years, a period she described as “heartbreaking, terrifying, traumatizing and difficult.” His family celebrated the end of treatment with an “epic camping trip” at Lake Powell. Ten days later, Ryan relapsed.

This time, the disease returned with a vengeance, seemingly immune to bombardments of extremely aggressive chemotherapy. He underwent four days of radiation so intense it maxed out his lifetime limit. “It made the first 3 ½ years seem easy,” recalled Compton. “He was at the end of the line.” His only hope was a bone marrow transplant, yet given their ancestry (Compton is Mexican-American, and her husband, Jason, is Polish, German, Russian and American Indian) they feared that finding Ryan’s genetic twin would be unlikely.  They were stunned when a “perfect match” was identified and willing to donate.

However, when residual leukemia cells were found in Ryan’s body, transplant plans were briefly halted as his family and  medical team led by Anna Pawlowska M.D., director, Pediatric Bone Marrow Transplant Program at City of Hope regrouped. “We decided together as a team to take a chance and go forward with the transplant even though he was at high risk for transplant failure.”  The night the donor cells arrived, Ryan stayed awake to watch the cells in the IV bag drip into his body. His mother has a photo of him smiling up at the bag. “He kept saying, ‘my new blood.’”

Compton also has photos of Ryan wearing his own miniature LAPD uniform. Throughout the years of his illness, a faithful procession of police and firefighters Compton calls his “honorary aunts and uncles” helped sustain the family financially and emotionally. LAPD Chief Charlie Beck even visited Ryan in the hospital while he was recovering from his transplant, bringing an LAPD teddy bear and a tiny LAPD Chief’s badge on a keychain. “There’s a brotherhood, a circle that goes on when someone’s in trouble,” Jason Compton said. “You help them out.”

One of her favorite photos of Ryan was taken in the Utah desert, where in November 2011 his family celebrated his one-year post-transplant anniversary with a three-mile hike. “He hadn’t been permitted to play around sand and mud, and finally he got to be a little kid and play with dirt and rocks. He just made up for lost time.”

In February 2012, Ryan went off all his meds, and is now powered by his donor’s blood. “Ryan is a very happy little boy who loves life,” wrote Compton, a boy who helps his family raise funds for groups like St. Baldrick’s and Alex’s Lemonade Stand, and likes coming back to City of Hope to give toys to kids in the pediatric unit where he once lived. “We do our best as a family to help others the way we were helped during our darkest days,” she added.

Years of treatment have taken a toll, however. Ryan has multiple learning disabilities, including Mixed Expressive-Receptive Disorder.  “It’s like a speech delay so he’s not as eloquent as a typical 8-year-old,” said Compton. Yet, he is quickly catching up with his fellow first-graders and loves working with occupational and speech therapists and with the aide who helps keep him on task in class.

When Ryan was first diagnosed, the Comptons enrolled in the Be the Match bone marrow registry, never suspecting their son would need a transplant.  “I really do hope we’ll be able to donate at least once. I’d do it in a heartbeat.  It’s better than any gift to give somebody a second chance at life – cancer free.”   

Ryan’s illness has transformed all their lives.  Compton, a geologist, deferred plans to teach college so she can help Ryan and her sisters’ children, whom she and her husband are also raising, “get caught up on everything they missed out on while our son was ill.”  

“We want you to know that we live more deeply because of this entire experience and also because of the second chance at life that you gave our son,” Compton wrote her donor. This summer, for instance, instead of replacing pipes and windows in their house, they’re going to visit friends in Europe.

“I just feel that life is so short,” said Compton during a recent interview. Watching Ryan’s hand pilot a tiny Matchbox car along the table, she added, “Who knows what the future holds for him? Jason is a police officer.  I have a perspective that any of us could walk out the door and not come back. We only have one life and it’s fleeting and it’s precious and there’s so much beauty and goodness in it. We have learned to try to focus on that. That’s the biggest lesson we’ve learned from this.”

To Ryan’s new “blood relative,” whom she considers a permanent member of their family, Compton wrote, “We often silently thank you as we watch our son sleep soundly, watch him run, or watch him do just about anything. We can’t wait to meet you and thank you in person and to share our son with you, so that you can see with your very own eyes what an amazing thing you have done for our family.”

Donor: Barry Crackett, Age 34 - Northumberland, England


 

 
 

Donor: Barry Crackett


‘I just hope that if my baby ever needed a donation there would be someone to step up.’

Barry Crackett was sitting alongside his wife Jessica’s hospital bed in England admiring their newborn son, Sol.  They’d planned for a peaceful water birth at home, but sudden complications led to a hospital birth and a rather traumatic entry into the world. Now that things were calm, and Sol was fine, Crackett finally could read the letter.

He remembers opening the card and seeing the tiny handprint, a slightly larger facsimile of his own little boy’s hand, and the words, “Thank you for saving my life!”  The greetings were sent by the mother of a child in the United States who had been saved by the bone marrow Crackett donated in 2010.

Reading the letter while cradling their own son “brought it home a bit more,” said the 34-year-old design engineer of his donation.  In a reply to the recipient’s mother, Crackett wrote, “…We have only been able imagine what life was like for the recipient and his family.  Becoming parents ourselves gave us a much deeper understanding of what it is you have all been through. Your letter made us both cry sad and very happy tears!”

Crackett will be bringing his wife, a social worker for children, and new son, whom he describes as a “gorgeous, placid and very chilled-out baby” to meet his recipient on May 10 during City of Hope’s 37th Annual Bone Marrow Transplant Reunion.

Back in 2002, when he was 23, Crackett was moved to sign up for the registry after seeing a television appeal about a little girl needing a bone marrow transplant.  Nine years later, the national registry known as the Anthony Nolan Trust called him. “There was no question about whether I would go through with the donation after finding out there was someone whose life depended on me,” Crackett said.

He and Jessica traveled to the University College Hospital in London where he underwent extensive testing. “The scary bit is when you’re told that the recipient is going through chemotherapy to prepare to receive harvested cells. If you pull out there’s a good chance the patient will die – so you sort of take care of yourself even more – eat better and try to keep yourself healthy.”

Crackett assumed the recipient lived in the UK. “I didn’t even know they exported bone marrow,” he said with a smile.  The day of the harvest he learned the patient was a child.  “It was exciting, daunting, all that sort of stuff, then you start thinking about this little recipient. Becoming a donor was an easy decision to make, but a harder decision was whether to find out updates of how the transplant went. I am so pleased I did.”

He hopes the upcoming press conference will help inspire others to donate. “Every extra person on the registry increases the chances of finding a match,” said Crackett. “I just hope that if my baby ever needed a donation there would be someone to step up.”
He treasures the handprint of the little American boy, which he intends to frame and display in his Northumberland home. Meanwhile, he’s looking forward to shaking that little hand in person on May 10.

Recipient: Ryan Compton, age 8 - Simi Valley, Calif.
 

Recipient: Joseph Mandel


'You just did a lot of praying that they would eventually find somebody.’

It takes cancer survivor Joseph Mandel awhile to open his Woodland Hills front door because he’s on crutches. His leg injury, however, is not due to disease but to a recent skiing accident.  Mandel, who underwent a stem cell transplant  from an unrelated donor in 2010, is back to his old passions, sailing down slopes, white-water rafting, and is even courting new loves like sky diving.

The son of Holocaust survivors, Mandel pushed himself through treatment – and recovery – just as he has driven himself during his successful career in the competitive world of information technology.

In December 2009, following a visit to a doctor treating him for rheumatoid arthritis, Mandel was astonished to learn that the bruises and fatigue he’d been noticing were traced to acute myelogenous leukemia.  He came to City of Hope in 2010 under the care of Auayporn Nademanee, M.D., medical director  of the Matched Unrelated Donor Program at City of Hope. “They laid it out straight,” recalled Mandel.  If a  donor could not be found for him, he likely would die within a year.

When no matches were found within his family, his name was added to the National Marrow Donor Program’s  “Be the Match” registry. “You just did a lot of praying that they would eventually find somebody,” Mandel said.  In the meantime, though, his family, including daughter, Falicia and sisters Sara, Monica and Sharon mobilized, working with Be the Match to stage community drives to find a donor.

A perfect donor eventually was identified through the registry. The transplant took place at City of Hope in April 2010. Mandel knew only that his stem cell benefactor was a 22-year-old male.

To help pass the time at the hospital – and regain control of his life – Mandel charted his daily blood work to track his recovery progress.  Physically fit before the transplant, he exercised daily “no matter how fatigued I got.” Instead of watching tv, he’d read, work on his laptop, and visit with family and fellow patients in physical and recreational therapy.  He asked to have tube feedings pared back so he could begin eating solid food.

Within 20 days, he was back home, where he became his own personal trainer with the aid of his wife, Rachel, who actually is a personal trainer and nutritionist. Mandel defied crippling fatigue by taking short walks and lifting small weights. Gradually his stamina returned.  Fiercely independent, he kept focused and in control; learning to clean his PICC line, cook meals to restore his 165-lb. frame, even create a  laptop spreadsheet to keep track of his 35 medications.

Mandel’s illness was torturous on his family, especially his mother (now 94) who lost her husband and daughter to cancer, yet along with her daughters faithfully traveled to City of Hope to visit Mandel. His family was pleased to learn his donor is from Israel, as is Rachel, who praised the ripple effect of donation. “You’re not only saving the recipient’s life; you’re also saving the lives of the family.”

How has the transplant transformed Mandel? “I don’t put a lot of thought into these huge, philosophical-type questions. I just wanted to do these things I did before…My big message is ‘don’t let cancer run your life.’”

He has noticed that “You start doing things you might not have done before.” When his illness prevented them celebrating their 30th anniversary in Israel in 2010, he and Rachel made the pilgrimage in 2011. “It makes you less afraid to take chances and do things.” Their children Marc, 30 and Falicia 25, are “highly adventurous, too,” and proudly accompany them in extreme sports activities like skydiving, whitewater rafting, and snow skiing. 

Mandel’s carpe diem spirit is underscored by his deep gratitude to the young man who saved his life and whom he’ll be meeting at City of Hope on May 10.  ”The old cliché, ‘life’s pretty short’ is true,” he says. “I could have been dead at 61.  Thank God for my donor and may God bless him.”
 
Donor: Nevo Segal, 25, of Ramat Hasharon, Israel

Donor: Nevo Segal

Joseph Mandel (recipient-left) and Nevo Segal (donor-right)

‘I think that one cannot refuse an offer to help save someone’s life.’

Nevo Segal and his younger sister, Mol, were driving to a Passover celebration in their native Israel, when she received a cell phone call from the bone marrow registry.

Weeks before, she was told that her bone marrow seemed to be a suitable match for a patient awaiting a transplant. Now, however, she learned there appeared to be an even closer match: her brother. “She passed me the phone,” recalls Segal with a smile.

Both siblings enrolled in the donor registry while in the Israel army. Enlisting as a donor is not required, but military service is mandatory. Since the army joined ranks with Ezer Mezion, the Israel Health Support Organization that includes the world’s largest Jewish Bone Marrow Donor Registry, donor enlistment has grown, says Segal.

He signed up for the registry in 2006 when he enlisted in the Israel Defense Force at age 18 ½, serving three years in its intelligence division. Though he didn’t receive the call to donate until he was 22, “there was no hesitation” in following through, he said. “I think that one cannot refuse an offer to help save someone’s life.”

His sister initially was disappointed that she could not be the donor, yet quickly was swept up in the family’s pride over her brother’s donation.

After Segal underwent thorough testing in a hospital close to his home in Ramat Hasharon (near Tel Aviv), his bone marrow stem cells were harvested and transported to City of Hope. 

Following military service, Segal traveled around the world providing technical support for a firm specializing in digital mapping. Now 25, he is living in England, working on “music computing” degree at the University of London.

Segal resists the notion that he is some sort of hero for being a donor. “I think that what I did was just a small part of the chain organized by medical centers around the world. I believe that the people working in these medical centers like City of Hope deserve all the credit.”

Still, he admits, “Knowing that even in the slightest way you helped save a life is a great feeling.”

Since the donation, Segal often thought of the patient whose body was fueled by his blood, and wondered whether he had conquered the disease.  He was relieved to recently learn that his recipient is thriving.  “I just can’t wait to finally meet him and his family,” said Segal.  After the reunion, he and his parents have been invited to join them for Sabbath dinner.

At the time of the donation, Segal said he knew “practically nothing” about the patient other than he was an older man. “Everything was kept discrete.”

Segal still treasures the letter of gratitude he received from the recipient and his family, and was particularly moved by one sentence in the letter.

“It said I’m in their prayers every day.”
 
BMT Recipient Joseph Mandel, age 63 - Woodland Hills, Calif.
Musician George Winston has new goal: Say ‘thank you’ inGerman

Musician George Winston has new goal: Say ‘thank you’ in German

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A simple act in Rhode Island, a lifesaving transplant inDuarte

A simple act in Rhode Island, a lifesaving transplant in Duarte

Stem cell donations are usually an anonymous gift, with people who want to help others donating their lifesaving cells simply from the rightness and joy of being able to save another human being....

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About the HCT Program
Stephen J. Forman, M.D., chair of hematology and hematopoietic cell transplantation, shares his views on the essence of care at City of Hope. He highlights the bone marrow transplant program (BMT) and the program's growth over the years.
 
Other videos:
 
Past BMT Reunions
Each year, City of Hope invites bone marrow transplant recipients and their families to attend the "Celebration of Life" event. View highlights from past reunions.
 
Physicians in the United States and throughout the world are welcome to refer patients to City of Hope.

There are a number of options you can choose from to refer a patient:

  • Call 800-826-HOPE (4673) to speak with a patient referral specialist.
  • Fax the patient face sheet to 626-301-8432
  • Complete an online callback request form
 
The focus of the Division of Hematopoietic Stem Cell and Leukemia Research is to improve the understanding of leukemia stem cells in order to develop cures for leukemia and other hematologic malignancies.
City of Hope's partnership with the Los Angeles Dodgers, includes ThinkCure!, an innovative, community-based non-profit that raises funds to accelerate collaborative research at City of Hope and Childrens Hospital Los Angeles to cure cancers.
 
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